Monday, April 28, 2014

I'm not one for story-type narration. It's never truly appealed to me. A while ago, however, I felt the need to. To preface all of this, some of you know that I recently underwent surgery. Before that I'd been in a near constant pain for months, and the painkillers that I'd been prescribed really weren't even helping anymore. Things were pretty awful, but I wrote this gem a little bit before that point.

The happiest time in a young woman’s life, the months leading up to her wedding. She has visions of beauty. She can imagine the rest of her life starting on that day. She gets stressed, sure, but knows it will pass because she will become the misses to the man of her dreams. Life is changing in a good way and she can’t wait for what will come next.

Then a pain. A pain deep inside of her. Like nothing she’s ever felt before. Her insides are tearing apart, they simply must be. Tylenol, Naproxen, Aspirin. Anything that she has. Nothing works. Nothing makes it go away. She’s afraid. This new, scary feeling with no discernible cause. What does does she do? The pain gets worse and she can’t move. She finds herself crying in bed. She tries holding her stomach, putting pressure on the area below her belly button, where it hurts the most. That hurts worse. This feeling, this strange new feeling, she has to find words for it. She has to be able to explain, but she can’t. She can only try to breathe between sobs.

It’s a Saturday, so her doctor isn’t is in his office. Her fiancé walks in to find her this way. He’s scared; he’s never seen her like this before. He’s seen her dramatic tears, he’s seen her in emotional pain, he’s seen her stressed, he’s even seen her in very real physical pain, but never anything like this. He tries to find out what’s going on, what happened. He has to do something, she can’t do it for herself. He calls the hospital where her doctor is often on call and begs them to tell him what to do. Their answers are not incredibly satisfying, but they do get him in touch with the doctor. The doctor tries to rescue, getting pain medications sent to the pharmacy as soon as possible, and scheduling an ultrasound for that very week to see if something had gone wrong.

The couple struggles through the next few days. He has to help her get out of bed and around the house. She didn’t cook, she didn’t clean, she didn’t do the laundry. She wasn’t who he knew she was. The entire time she was afraid. She had a feeling they wouldn’t find a thing and there would be no way to fix this. She felt like she was in a battle with her body and it was winning. She couldn’t understand why they couldn’t just work together. Still, she would wait. Her faith in the doctor would not falter. He was a good man, a smart man, and more than capable as a doctor.

The ultrasound day comes. The couple struggles into the office. The good doctor does a simple exam to make sure there’s nothing that he can see or feel to explain this. His exam brings her to tears from the pain it causes. He finds nothing new. She gets dressed again, every movement causing pangs of pain, and goes across the hall to have the ultrasound. The probe hurts as well. It pushes and pinches in what feel like the worse possible places. She watches the screen, assuming that he’s done the same. She sees the images that she’s seen before, from having ovarian cysts. Uterus- normal. Right ovary- normal. Left ovary- can’t see it… there it is. Normal. Nothing unusual. Nothing out of the ordinary with the exception of the tears she’s holding back. Everything as she expected. Nothing that she wanted.

She dresses again and they go back across the hall to meet with the doctor once again after he’s seen what she’s just seen- nothing. Waiting in the office she starts to cry.

“I knew they find nothing. I knew we’d have no answers. I knew this would be a waste of time. Whatever this is, we don’t know. We have no idea what it is that’s taking away my life. No clue what’s making me feel such pain that I don’t know if I can keep going. What are we going to do?”

“Let’s wait for the doctor. He’ll have more information. We know he’s good, and he’ll be able to help us decide what we do next.”

He’s trying to be comforting in any way he can think of.

The doctor comes in. He tells them what they know, there is no abnormality to be found here. They haven’t seen, felt, or heard anything that explains this. He does, however, have a theory. A theory he mentioned off the cuff months ago, but of course the couple never forgot it. Endometriosis.

Endometriosis. A disease that has no cure. A disease that can only be diagnosed with surgery. A disease that can rob a woman of her fertility. For a twenty-five year old young lady with what is supposed to be her whole life in front of her that can shake everything she knew. Pain that could never go away, even with treatments. Damage inside that can make you unable to have children, create a family. Damage that might only stop when you have a hysterectomy, removing every chance at becoming a mother. Even then, let over cells can multiply if they haven’t been removed, and the damage that has already been done to your body and nerves can continue to cause pain even after every treatment option has been exhausted.

The next step is discussed. Surgery, hormonal treatments, pelvic pain specialists, pain management. Her head is spinning. She can’t process this. She’s planning her wedding, getting ready to get married, having her fairy tale. This is like a second villain. Something standing in the way of the happiness she’s hoped for, the happiness he’s worked so hard for. She can barely understand what’s being said, so thankfully he takes the reigns.

“What would you do if it was your wife?”

“I would see the specialist. I would have him give an opinion before we do surgery and put you two through that.” A simple an honest answer from the trusted doctor.

An appointment is set up with the pelvic pain specialist, and measures taken in the mean time. Changing birth control for hormonal therapy, increasing dosages of other medications that have been shown to help some women with this kind of pain. Follow up appointments to keep everyone informed. The earliest appointment with the pain specialist is seven weeks away. They just have to make it seven weeks.

That seven week point? It falls just seventeen days before their wedding. She will be meeting with bakers, florists, hairstylists, makeup artists, venue coordinators, seamstresses to make sure her dress fits between now and then. Or will she? They both remember that Saturday. The image of her writhing in pain, barely able to breathe is one that cannot leave their minds. How can she do all of these necessary things if that happens again? She’s strong, he knows it, but she doesn’t know if she’s that strong. The fear and the doubt fill them both, but they both try to keep strong faces. They have no choice but to go on.

And that was it. For a long time. Now there's been specialists and surgery and hopefully hope for the future again. I'll be recovering for a while, and I'm sure I'll share more once I see the doctor again. When I wrote this no one could tell me what was happening, nobody could promise me that it would get better, but worst of all nobody could tell me if what I was feeling was "normal." It can be different for every woman, making it nearly impossible to find out if you're right or just crazy.

Through surgery they did find and endometriosis and remove it. I still don't know everything and I don't know if I will. Recovering from a "major" surgery drives me crazy with boredom. Once I have more information, and more specific information I plan to share what I can with whomever needs that information. Until then, I'm laid up for weeks! Laid up and bored.

Thanks everyone for your support, sorry if this is how you're finding out. I didn't want people to worry or it to become a big focus in the time before our wedding. Either way, thanks to everyone who has helped me so far. I can't even imagine how I would have gotten through without all of the support.

Monday, April 7, 2014

It's been a while since I've written anything for this blog, but real life got in the way for a while. Since I last wrote I've gotten married, moved, made some major life decisions, and basically gone through a lot. It's been crazy and kept me busy, but that's real life.
Life changes us and, if we're good enough, makes us grow. We learn about ourselves and others and can see things differently. I'm not saying that you wake up one day and decide that things are different, but if you never see the difference you're probably doing it wrong. This blog has been an amazing outlet for me to complain about absolute bullshit, and share some happier things. I can't think of something that would make me want to change a single entry, no matter how silly and trivial they might be. Even so, I think it might be time to let some more serious issues permeate this little vent. Each and every one of us has serious things going on every day, even if no one can see it, feel it, or hear it.

Today's interesting topic: Developing as an independent human being.
We are all born into a life. We don't get to choose anything about it. We can't decide wether we will be born rich or poor, where we live, what color our skin is, how great our families are, what we'll look like... we get to make no decisions at that point. The dice roll and out comes a life.
We don't get to start making decisions for ourselves for years. Maybe you chose your friends when you were first able to remember, but chances are they were friendships of proximity and convenience. I still remember watching the Spice Girls and playing Tomb Raider with one of my best friends as a little kid. She was awesome and her parents let her watch VH1, which I was never allowed to do. Her mom always had dinner on the table and her parents didn't fight in front of company. She was really tiny and had long brown hair (even though we haven't talked in years I'm pretty sure those things are still true). Her name was Kelley, and she lived just a few doors down from me. I may have chosen her as a friend out of other neighborhood kids, but our parents got along and she was close to my house, making play dates easy for everyone. Basically, I didn't really get to choose Kelley. She was there. That didn't make her any less cool to hang out with.
When do you start making decisions for yourself? When you go to school? Maybe. Still, even in school you have your classes chosen for you until you're in high school. Your parents can fight for different classes or curriculum but you have no real level of control. By the time you start making decisions about your education most of us are already filled with the thoughts and values of our family of origin. Unless one of those values is independent thinking (something dangerous to instill in your kids) most of us will continue to do what we've always done and seen.
After you turn 18? Some of us go to college, some of us go to work, some of us make some bad decisions and go to jail. Even those outcomes are seriously dependent on our family of origin. Maybe we love our families and want to stay with them forever, so we go to school or work close to them. This, kids, is how entire generations end up living in the same neighborhood forever. There isn't anything wrong with that as long as we learn somewhere along the way to make our own choices and see our world the way it actually is.
Even once we gain independence from this family of origin we are very often still enmeshed with the people and places we came from. Most of us want our families to be proud of us, to care about us, and be there for us when we need them. These yearnings can cause us to tailor our decisions to what other people want rather than what we would truly like. Unfortunately there aren't many people who can be hands off and supportive, loving and separated. At a point most of us have to decide if we want the things that we've always had, the things that make us comfortable, or if we want to pursue our lives in the fashion we see fit.
I hope that there is a way to strike a balance between these two things. It's a complicated dance that doesn't seem easy to learn or maintain. When you start to build the life you want you have to stay away from criticisms that aren't constructive. You've got to find faith in yourself and leave the doubts of others behind. We all have to figure out exactly what it is we want and filter out anything that would make that more difficult. Life is hard enough as it is, nobody needs naysayers following them the whole way.

At 25, with an MA, married, and about 700 miles between myself and my family of origin I still seek their approval and guidance, all while trying to live this life I'm building for myself and the family I'll have. I keep all of these things in mind and hope that I'll figure out the delicate dance to keep my family involved and happy while staying true to myself and the things I want out of life. It's complicated, but it's real life.